Worth visiting Mayo Clinic for evaluation of idiopathic neuropathy?

Posted by rybren @rybren, Apr 22 12:13pm

Anyone been to Mayo for IPN? Diagnosed 2021 post Covid vaccines with bilateral Idiopathic PN. Had EMG, ultra sounds, anti body testing, all types of diagnostic testing has been completed by PPC and Neurologist. On Gabapentin 3x a day 300 mg. Try everything local MD’s could muster. Now I am on the not much else we can do for you- good luck train. Love to hear of others made this leap. 5-7 day commitment in MN.
Thanks if you have input.

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Profile picture for edva1943 @edva1943

@terryjee Intravenous Immunoglobulin = IVIG. Often given on a regular schedule over a long period of time.

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@edva1943

Expensive esp. without insurance and your doc can convince your ins carrier to cover it. IIRC when my granddaughter had it it was like $10K per session.

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Profile picture for phyllisq @phyllisq

@allegheny
Ironic that you and I are almost the same age and having such a similar journey. I also believe that overcoming fears is important. I thought gabapentin is for pain so I am surprised to read that it is helping you.
Connect has been so helpful. It has been very difficult to accept that doctors have no answers and no effective treatment plan.

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@phyllisq Hi Phyllisq, yes the Gabapentin helps with the burning in the thighs. I know this because I decided to get off of it and the burning was intense, so I started it up again and burning again is minimal.My PT had me do curbs yesterday, at first I said no, cant do it. He had me hold his finger and I could do it. I told him that is all I need to be grounded. He insist I do it without holding his finger, I hesitated he said I am strong and I wont fall, he had faith in me, said if I was to fall there would be too much paper work for him. He gave me courage, if he knew I could do it, I should know that I could do it without holding on to something. Deep breath and I stepped down, easy peasy!! I turned and went back up, I did this 10 times!! I DID IT!! Then onto some mulch, no problem with that, because he believed in me and in turn I believed in myself.. I need to continue with just saying I can do it, and I can. My next challenge is sand! We live near the beach, I will try this with my daughter very soon! Exercise is key and squeezing glutes is a must! Keep trying and never say you cant, but do it safely! Best wishes to you!!

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Profile picture for sash @sash

My experience at Mayo Clinic Neurology involved an extensive evaluation, including a detailed history and multiple tests across different departments—such as a painful EMG , hearing and heat studies, bloodwork, etc.

$$$$ later there was no clear cause identified for my idiopathic peripheral neuropathy. I was referred to a pain specialist who recommended starting gabapentin and gradually increasing the dose, which did not provide meaningful relief and the side effects outweighed any benefits. In short, I did not find the process helpful.”

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@sash I'm so sorry to hear you did not find Mayo helpful. And you mentioned $$$$. Did you have to come out of pocket for a lot of money? Others are saying insurance (particularly Medicare) pays for it. Can you please tell us more about your experience with the costs?

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Profile picture for allegheny @allegheny

@phyllisq Hi Phyllisq, yes the Gabapentin helps with the burning in the thighs. I know this because I decided to get off of it and the burning was intense, so I started it up again and burning again is minimal.My PT had me do curbs yesterday, at first I said no, cant do it. He had me hold his finger and I could do it. I told him that is all I need to be grounded. He insist I do it without holding his finger, I hesitated he said I am strong and I wont fall, he had faith in me, said if I was to fall there would be too much paper work for him. He gave me courage, if he knew I could do it, I should know that I could do it without holding on to something. Deep breath and I stepped down, easy peasy!! I turned and went back up, I did this 10 times!! I DID IT!! Then onto some mulch, no problem with that, because he believed in me and in turn I believed in myself.. I need to continue with just saying I can do it, and I can. My next challenge is sand! We live near the beach, I will try this with my daughter very soon! Exercise is key and squeezing glutes is a must! Keep trying and never say you cant, but do it safely! Best wishes to you!!

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@allegheny I will try. Thanks for the pep talk.

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Good luck getting into Mayo. I have tried all three locations with no success. Try to get in with a Neurologist affiliated with a teaching hospital. I finally got a Doc at Columbia U in NY.

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Profile picture for moorethrpy @moorethrpy

Good luck getting into Mayo. I have tried all three locations with no success. Try to get in with a Neurologist affiliated with a teaching hospital. I finally got a Doc at Columbia U in NY.

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@moorethrpy got in no issue

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Profile picture for rybren @rybren

@rybren You might be younger but great if you were able to get app't.

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Profile picture for moorethrpy @moorethrpy

@rybren You might be younger but great if you were able to get app't.

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@moorethrpy I will let everyone know what they say. I am 70, not so young but that's relative: I will respond back when I return mid July. Best to you. MC

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Profile picture for allegheny @allegheny

@phyllisq Hi Phyllisq, yes the Gabapentin helps with the burning in the thighs. I know this because I decided to get off of it and the burning was intense, so I started it up again and burning again is minimal.My PT had me do curbs yesterday, at first I said no, cant do it. He had me hold his finger and I could do it. I told him that is all I need to be grounded. He insist I do it without holding his finger, I hesitated he said I am strong and I wont fall, he had faith in me, said if I was to fall there would be too much paper work for him. He gave me courage, if he knew I could do it, I should know that I could do it without holding on to something. Deep breath and I stepped down, easy peasy!! I turned and went back up, I did this 10 times!! I DID IT!! Then onto some mulch, no problem with that, because he believed in me and in turn I believed in myself.. I need to continue with just saying I can do it, and I can. My next challenge is sand! We live near the beach, I will try this with my daughter very soon! Exercise is key and squeezing glutes is a must! Keep trying and never say you cant, but do it safely! Best wishes to you!!

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@allegheny Happy for your successful steps, even small ones. Do you have 24/7 pain, or only tingling?

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